The public, including patients, can and should be involved in all aspects of research, including study design, communication, and ethics. Patients bring unique knowledge and skills to projects, which can improve the quality of research. The Innovative Medicines Initiative encourages public and patient involvement (PPI) in all of its projects.
PD-MitoQUANT is fortunate to have two people with Parkinson’s involved in the project through our patient advocacy partner Parkinson’s UK. Here, we meet Paula Scurfield.
Paula was diagnosed with Parkinson’s in March 2014 and is the fourth person in her family to have the condition. Before retirement 10 years ago, Paula worked as a geography teacher and part-time university lecturer in Hong Kong, Washington DC, Beijing, the Maldives, and the UK. She believes that volunteering and taking part in clinical trials is empowering, enabling her to meet the challenges of living with an incurable neurodegenerative disorder head-on. When not travelling, gardening, exercising, and spending time with her family- including six grandchildren, one dog, and one rabbit – Paula volunteers for Parkinson’s UK as a lay reviewer of research grant applications, taking part in PPI tasks, chairs the Research Support Network Development Team, is a First Steps presenter (a two-day programme for newly diagnosed people with Parkinson’s), and a volunteer educator. She is fascinated by the aetiology of PD and is particularly keen to learn more about the underlying biochemical pathology of mitochondrial malfunction and alpha-synuclein misfolding. Paula is greatly looking forward to being involved as an expert patient in the PD-MitoQUANT project and to doing everything she can to assist the research team.